KosAbility is a community diary series that is posted at 5 PM ET every Sunday by volunteer diarists. This is a gathering place for people who are living with disabilities, who love someone with a disability, or who want to know more about the issues surrounding this topic. There are two parts to each diary. First, a volunteer diarist will offer their specific knowledge and insight about a topic they know intimately. Then, readers are invited to comment on what they've read and or ask general questions about disabilities, share something they've learned, tell bad jokes, post photos, or rage about the unfairness of their situation. Our only rule is to be kind; trolls will be spayed or neutered.
Previous diaries with the KosAbility tag can be found here.
My daughter, know on Daily Kos as "Kidlet" is an upbeat, funny, happy, outgoing, talented young lady of 13. She's highly verbal, amazingly observant, thoughtful, compassionate - the kind of kid every parent would be proud of. Which is why folks are astonished to find out she receives special educational services, is in fact in small self-contained classes for math and English. "You're kidding!" they'll exclaim. "She seems so normal."
I could devote a whole diary to what on earth "normal" means in light of incredible human variation, but that's for another day. Today, Kidlet and I will take you on a whirlwind tour of the experiences of one family with the system, and what we've learned about getting the best services. Because there are times when it seems that the purpose of the school system is to deny services unless forced to provide them.
Kidlet's learning disabilities are tough to get a handle on, and that's a problem, at least in our school system. To qualify for services, they want a child to demonstrably fit into a given box - a defined learning disability. Beyond a shadow of a doubt Kidlet has dysgraphia, but honestly that's a challenge only because it makes it harder for her to cope with her major, less easily categorized learning disability: an absolutely wretched verbal short-term memory.
My daughter's verbal short-term memory tests around the 2nd or 3rd percentile (she once tested as high as the 4th percentile, woohoo, but that was an outlier). Abysmal isn't a strong enough word to describe her verbal memory. She doesn't have classic auditory processing disorder, in that she doesn't have language difficulties (and is very musically talented, not typical of folks with auditory processing disorder). She just has the verbal memory issues, to an extreme. If you're a parent who has ever said to your child, "I might as well be talking to a wall," welcome to my world...every minute of every day.
She has a great long-term memory - better than mine. I often say that once something is in there it's in there for good, but getting in there orally is a monumental task.
At the age of 13 Kidlet still becomes overwhelmed if given 2 instructions simultaneously. Never, ever can she be asked to do B before she's finished A. Even simple verbal directions can be hopeless, in that she'll have forgotten or confused the beginning before you get to the end. The immediate solution, of course, is "write everything down." Did I mention that Kidlet has dysgraphia? Writing things down has its own set of challenges.
So she has trouble remembering what she hears (remember she can understand everything; it just literally "goes in one ear and out the other"). But she has a horrible time taking notes because of the dysgraphia. Sitting in a class lecture is pretty much pointless for her.
If you read the last symptom of dysgraphia, "large gap between written ideas and understanding demonstrated through speech," you have Kidlet's academic performance in a nutshell. Verbally, she's incredibly bright and conversant. On paper, she comes across as stilted and disorganized, with grammar mistakes she'd never make while speaking.
So she came to me at age 9 1/2; a beautiful, charming, loving young lady who could neither read nor write. Astonishingly, she was receiving no special educational services for a couple of reasons: First, she was a foster kid and the school system she came from was treating all her problems as "social issues." Second, as a result of many factors (improper medication, serious problems in the foster home and her inability to do any of the classroom work) she had developed some behavior problems and the school system was focused on the behaviors, not the causes. Note, by the way, that behavior problems are not unusual in children with unidentified learning disabilities.
The first trick was to figure out what was going on. Thankfully, Kidlet was place with a savvy former Special Ed teacher, who saw immediately that her behavioral and social issues masked real learning challenges that needed to be addressed. She helped me fast track Kidlet through the Child Study process. Child Study is my district's process to comply with the Child Find mandates of IDEA (the Individuals with Disabilities Education Act, which drives Special Education regulation.)
One of the things Mrs. D. told me I found particularly appalling: She said, "as hard as it is, if we want Kidlet to qualify for services, we've got to let her fail." Mrs. D. could have given her easy work, done things that would allow her feel successful and gain a sense of accomplishment. And if she felt that all Kidlet needed was time to catch up, she would have done these things. But she clearly recognized the signs of Kidlet's significant learning disabilities and she and I realized that getting her into services as soon as possible would give her the best chance to ever catch up. And as she explained to me, our county almost never gives Special Educational Services to children who are not flat out failing.
NOTE: As plf515 notes in the comments, legally the "they have to be failing" thing is not true. Mrs. D was simply pointing out the practical truth of dealing with the system in our county. I could fight on principle and take forever in an uphill battle to get Kidlet services, or I could cave to reality and fast track her. I chose to go for efficient over principle, because Kidlet needed services as soon as possible.
So hard as it was, we let her fail. Since she could neither read nor write, she was failing every single class. Mrs. D's compassionate approach was to mark Kidlet's test papers only with stars by the questions she got right, and a score at the top showing only the number of questions she had correct. On written papers she'd make a copy to score for her records and mark the original only with a few things she had found to reinforce. It was a difficult time, as Kidlet had no idea that the test scores she was bringing home were little better than chance: 25-30% often on 4 answer multiple choice tests.
Our next battle was the great "social issues" debate. Identification of learning disabilities by the Child Find group requires that performance lags not be the result of (among other things) "Cultural factors or Environmental or Economic Disadvantage (see number 3 here.) So having determined that suggested interventions weren't working, the group tried to say we should allow her one year in my home to rule out those factors of environmental or economic disadvantage. I was furious: I had a by then 10 year-old who could not read or write. She had lost 4 years of schooling; she didn't have another year to lose.
Here's where we were lucky. Since Kidlet came to me from foster care, she is eligible for Medicaid until her 18th birthday regardless of my circumstances. And Virginia Medicaid will pay for one comprehensive educational evaluation every 24 months. So I took her to the local Child Development Clinic of the Virginia Department of Health, where they gave her a number of complete screenings. Their findings were extremely clear and they were very good at packaging them for presentation to the school board. In fact, they agreed to come advocate for Kidlet at a meeting with the Board of Ed.
In the face of this specific evidence from a clinic operated by the Department of Health (and clearly faced with a Mom who was not going to be pushed around) the school board caved and Kidlet was found eligible for Special Educational services. Which highlights two major flaws: first, many families cannot afford the testing I got for Kidlet. Despite being through the Department of Health, the testing is not free; from independent child development clinics it can be quite expensive. Second, as attested by Kidlet's heroic teacher Mrs. D., the services go to the children whose parents are the best advocates, not necessarily to the ones who most need the services.
I had planned to write more on the process of developing the IEP (Individualized Educational Plan) which outlines the services and accommodations each child receives, but this diary has gotten a little long. So I'll close with some quick tips and some resources.
Tips:
It's called an Individualized Educational Plan for a reason. Many school districts have cookie cutter plans they roll out for a child with xyz disability. The IEP must be tailored to and take into account all your child's educational needs.
Parents have a right to be involved in the process. At the first IEP meeting I attended, they brought a completed IEP form and proceeded to try to run through it with me and so I could sign in the highlighted areas. Well, not so much. You also have a right to be informed in advance about meetings and to bring support with you if needed.
Each IEP has goals. They should be specific and measurable; if the school cannot tell you a realistic way they can measure your child's IEP goals, they are not adequate goals. Be stubborn about this - the goals determine how the rest of the IEP will be implemented, and are your best measure of how your child is progressing. For example, one of Kidlet's goals is to achieve certain scores on specific reading tests every year; her progress in reading is key to her academic success given her verbal memory issues.
Schools are mandated to place each child in the least restrictive environment in which they can be successful. Kidlet struggles badly in large groups, and lecture situations are useless for her. She has a self-contained small class placement for her core classes. Don't be afraid of these self-contained placements - mainstreaming is not necessarily best for every child.
Buy this book. Read it. Then take it to all meetings with school folks, on top of your pile, clearly in view. "Look," it says, "Here's a parent who knows their stuff, better not cut corners."
There's so much more. If there's interest in another diary specifically on writing the IEP, let me know.
Online Resources:
Building the Legacy: IDEA 2004 - The US Department of Education's informational website about IDEA (the Individuals with Disabilities Education Act of 2004).
Wrightslaw - a very informative Special Education Law website. They do have a tendency to try to sell you their books (which are well worth buying) but much of the good stuff is excerpted on the website, making it a very useful resource.
LD OnLine - Full of articles and links on various learning disabilities, as well as a lot if info on IEPs and Special Education.
UPDATE: Nurse Kelley requests I tell you how Kidlet is doing now. Well, great about sums it up. School will always be tough for her; even with accommodations, the classroom environment is the polar opposite of what works for her. But she's succeeding - at least a C in all academics and brilliantly well in her music classes. We love her choir and band classes. There, she's the leader, and provides support and assistance to other kids. It's had a fabulous effect on her sense of self.
She's going to be just fine. She's gradually learning to cope with and adapt to her learning disabilities; and she's so good with people and animals that her dream of being a Veterinary Assistant seems very achievable.